Amy Julia Becker's Blog, page 35

“They aren’t special needs. They are human needs.”

“They aren’t special needs. They are human needs.”

My friend Jay Wolf gave this beautifully concise explanation of why the term “special needs” is problematic. To say that his wife Katherine, who uses a walker and a wheelchair, has “special needs” isn’t accurate. Nor is it accurate to call it “special needs” when we create an Individualized Education Plan with and for our daughter Penny.

Katherine has the same human needs as everyone else. She needs mobility. She needs access to bathrooms and public spaces and transportation. 

Penny has the same human needs too. She needs food. She needs shelter. She needs meaningful relationships. She needs to be respected and loved.

We are all invited into relationships of mutuality in which we give from what we have and receive what we need from the loving support and kindness of the people around us. We are all invited to adjust our spaces and expectations and busy schedules in order to accommodate one another. We are invited to slow down and open up to our own needs. 

We are invited to recognize that the needs of the people around us are no more or less special than our own. We are invited to be human together. 

Photos by Ashley Monogue

More with Amy Julia:

Down Syndrome’s “Exclusive Club”Hope Heals and Hope Heals CampDisability Is Central to James McBride’s Latest Novel. Critics Are Missing That Point.

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , Twitter ,  Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform. 

The post “They aren’t special needs. They are human needs.” appeared first on Amy Julia Becker.

“They aren’t special needs. They are human needs”

“They aren’t special needs. They are human needs.”

My friend Jay Wolf gave this beautifully concise explanation of why the term “special needs” is problematic. To say that his wife Katherine, who uses a walker and a wheelchair, has “special needs” isn’t accurate. Nor is it accurate to call it “special needs” when we create an Individualized Education Plan with and for our daughter Penny.

Katherine has the same human needs as everyone else. She needs mobility. She needs access to bathrooms and public spaces and transportation. 

Penny has the same human needs too. She needs food. She needs shelter. She needs meaningful relationships. She needs to be respected and loved.

We are all invited into relationships of mutuality in which we give from what we have and receive what we need from the loving support and kindness of the people around us. We are all invited to adjust our spaces and expectations and busy schedules in order to accommodate one another. We are invited to slow down and open up to our own needs. 

We are invited to recognize that the needs of the people around us are no more or less special than our own. We are invited to be human together. 

Photos by Ashley Monogue

More with Amy Julia:

Down Syndrome’s “Exclusive Club”Hope Heals and Hope Heals CampDisability Is Central to James McBride’s Latest Novel. Critics Are Missing That Point.

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , Twitter ,  Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform. 

The post “They aren’t special needs. They are human needs” appeared first on Amy Julia Becker.

The Particular Faces of People With Down Syndrome

Penny and her friend Rachel call each other twins sometimes. It came about because they realized that they could open each other’s phones without a password. Apple’s facial recognition software couldn’t distinguish one from the other. 

On the one hand, this was a fun moment of discovery. It was a moment of bonding. 

On the other hand, it’s weird—maybe even offensive?—that Apple can’t distinguish between their two faces. Both faces are round, with button noses and big beautiful eyes with an epicanthal fold of skin that distinguishes them from those of us with the typical 23 pairs of chromosomes. But even though Penny and Rachel both have Down syndrome, they do not have the same face. 

Years ago, I went over to Rachel’s house for the first time. Hanging in their kitchen was a long poster with hundreds of faces. Every person was dressed in a black tshirt, photographed from the waist up. Their clothing and posture was the same. They all had Down syndrome. But what is beautifully remarkable about this poster is the way the photographer captured the incredible variety among all the distinctive individuals side by side. 

I love that Penny and Rachel can bond and take delight in being “twins.” I also love that they each have their own particular beauty, their distinctive look, and I wish that the Apple facial recognition software was sophisticated enough to see it.

More with Amy Julia:

Book: A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny Free Resource:  Missing Out on Beautiful: Growing Up With a Child With Down Syndrome What Do I Think About the Barbie With Down Syndrome?

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , Twitter ,  Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform. 

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Disability Is Central to James McBride’s Latest Novel. Critics Are Missing That Point.

Has anyone else read James McBride’s latest novel, The Heaven and Earth Grocery Store?

I really liked it. I’ve read reviews, but I think the critics are missing a central point of the book. 

The story centers around a neighborhood in Pottstown, PA called Chicken Hill, where Jewish immigrants and Black families live side by side, largely peaceably. Racial and ethnic tensions are embodied in the town’s doctor, who is also the head of the local KKK. There’s a lot more to the story, but the doctor ensures that a local young boy named Dodo, who is deaf, becomes institutionalized by the state rather than cared for by his community. 

Ayana Mathis writes for the Atlantic about McBride’s hopeful integrationist vision.

Danez Smith, for the New York Times, writes,

“this novel is about connection [but McBride] also seems interested in what is unknowable or untranslatable across difference.”

Both mention the ways the Jewish and Black communities exist in solidarity and tension with one another. But they seem to miss the reality that the experience of disability is also central to this novel. 

McBride’s Afterword explains that the genesis of this book was his own time as a summer camp counselor with kids with disabilities. Dodo connects deeply with both the main Jewish character, Chona, but also with Nate, the Black man who ultimately seeks to rescue him from the institution. And then, when he is in traction and within a cage in the midst of countless abandoned bodies and souls, Dodo forges a connection and indeed a friendship with the boy in the next cage over. Dodo is the heartbeat of this novel because he demonstrates the power of human connection—across differences, amidst impossible hardship, no matter race or class or religion—to bring hope. 

As Smith wrote for the Times, this is a Great American Novel. And that greatness comes because of Dodo, who represents all the people who are marginalized and vulnerable as a result of the power structures of this nation, and who can nevertheless forge friendships, community, and networks of courageous care that can bring order out of chaos, light out of darkness, and bring heaven to earth.

More with Amy Julia:

What Penny and I Thought About the Champions MovieHollywood, via Barbie, Still Doesn’t Know What To Do With DisabilityTIME | Where Are All the Children’s Books Featuring Kids With Down Syndrome?More AJB Recommends

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , Twitter ,  Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform. 

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Healing Gets in the Way. And That’s Okay.

I could hardly stand up from my chair. The pain came out of nowhere, it seemed. No injury. No tweaking. No unusual activity. Just shooting pain down the back of my right leg. 

I’ve learned to pay attention to pain. I’ve learned that whenever my body surprises me with pain, it is sending me a message.

And this pain was severe enough that I knew my body was saying: Danger. Watch out. If you go that direction, you could get hurt. But I also felt like I had to go that direction. This was all happening in the midst of our move. I literally needed to get out of bed and walk down the stairs and open the door to the movers. And walking down the stairs alone felt like an excruciating rebuke. 

I walked down the stairs. And over the days that followed, as the pain slowly subsided, I reminded myself that I can receive love and release myself to that same love. I reminded myself of all the things I’ve learned: 

That healing gets in the way of performance and production, and that’s okay.

That a healed me is good, even if it means slowing down.

That it is safe to heal and to take the time to heal.

It’s the end of the summer, and the end of our initial move. And I still get twinges of that pain now and then, like a reminder, a signal flare, bringing me back to the healing that comes in believing I am not worthy or loved due to my performance but rather I am beloved. So I am thankful for the twinges and the disruptions, because they bring me back to a deeper truth.

More with Amy Julia:

Free PDF: A Guide to Body PrayersThe Deeper TruthS6 E11 | Chronic Pain’s Untold Story with Dr. Haider WarraichS6 E14 | Lessons for Healing in a World That’s Sick with Lyndsey Medford

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , Twitter ,  Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform. 

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What Penny and I Thought About the Champions Movie

I’m a little late to this game (no pun intended), but we watched Champions as a family recently, and we all want to recommend it. (Spoiler alert!)

Woody Harrelson plays the lead, as a volatile basketball coach who avoids jail for drunk driving by coaching a team of Special Olympic athletes. It’s a feel-good (though often crass) film based on a true story of mutual growth and care. It offers all the things you would want to see in a sweet, comedic, sports movie called Champions. I asked Penny what she liked about it, and she said:

“I liked that even though they had challenges they pushed through and made it all the way to the championships. I also liked the love story that was mixed in with the basketball.”

What makes Champions remarkable is not the plotline—most sports movies follow this formula, though there’s a fun twist at the end of this one. What’s remarkable is that the filmmakers hired a group of adults with intellectual disabilities to play the majority of the main characters. It’s unusual to watch a film where people with intellectual disabilities are well represented, the acting is terrific, and they tackle the everyday issues of bigotry and bias and hardship and friendship and family life that these young adults routinely face. 

A new report finds that “Only one film out of the 800 reviewed included disability representation proportional to what’s seen in the U.S. population.” This film gives us not only a story of hope and redemption, but also a vision of the types of stories worth telling and people worth featuring on film.

More with Amy Julia:

Hollywood, via Barbie, Still Doesn’t Know What To Do With DisabilityReview: The Peanut Butter Falcon | by Amy Julia BeckerNormie Film Streaming Now

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , Twitter ,  Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform. 

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12 Year Anniversary of A Good and Perfect Gift

Twelve years ago today, A Good and Perfect Gift came out into the world. I still hear from readers regularly, and I am so so honored that our story has been a source of encouragement and hope and permission to feel all the feelings for so many families who have faced the unexpected news of a Down syndrome diagnosis. 

That said, I didn’t write A Good and Perfect Gift for those mothers and fathers. I figured they would learn all the things we had learned, because they too had been given the unexpected gift of their child. They too would submerge themselves in fear and shame and guilt and anger and loss and ugly grief. They too would be lifted up out of that dark place and into a different way of being, of seeing ourselves as fellow humans, of giving and receiving, of slowing down, of beauty and grace. 

I wrote this book for people like me, before I had a child with Down syndrome. Type-A, perfectionistic, over achievers who think their value comes from doing better. I wrote this book for people I now call meritocratic spiritual seekers. People who have always worked hard to get what they deserve and who are asking the big questions about what matters and what it means to be human and how we might be able to live in hope and love and peace together.

So whether you are a family member of a person with Down syndrome, or just a person who longs for a new way of seeing the world, perhaps A Good and Perfect Gift is for you.

More with Amy Julia:

Book: A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny Free Resource:  Missing Out on Beautiful: Growing Up With a Child With Down Syndrome

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , Twitter ,  Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform. 

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There Are Good Reasons for Leaving Church. Why Do I Stay?

There are good reasons for leaving church: scandals, abuse, hypocrisy, patriarchal structures, intolerance.

Nearly 40 million American adults were once churchgoers but aren’t any longer, according to Jim Davis, Michael Graham, and Ryan P. Burge’s recent book, The Great Dechurching.

But not all are leaving because of scandals and abuse. There’s also a phenomenon of people leaving the church because they are drifting away. I have friends who speak fondly of church, in a similar way that they speak of their sweet Great Uncle Joe or memories of the ferris wheel at the county fair way back when. I was reminded of that nostalgia, when I read Perry Bacon’s essay for The Washington Post last week. His drift occurred because of doubt and politics and Covid and other things to do on a Sunday morning. 

And for those of us who are drifting, not running, away, I wonder whether that is because we are forgetting about Jesus. The center of Christianity, as far as I understand it, is this idea that God came to us, in the person of Jesus, in order to let us know that we are loved, and cared for, and healed and saved and invited to participate in all the goodness and beauty and grace and joy and love and peace (and more and more) of who God is. Forever. In and through the life, and death, and resurrection of Jesus. 

I forget it all the time. I think church is about committees to decide whether we need air conditioning. Or about hymns or creeds or confirmation classes. Or about showing up for one another. Or about opening up our space to serve our neighbors. 

Church is many of those things, but we only become the church when we remember that the reason church is those things is because of Jesus. The one who lived what he taught. Loving our enemies. Slowing down to listen to the people who are oppressed and overlooked. Upending social structures. Rejecting power and position. Moving towards the ones in need without judgment. Critiquing the ones in power without fear.

I am incredibly sympathetic to the “nones” who are religiously homeless. I resonate with Perry Bacon’s desire for a place to belong, a place to worship, a place to call home. I just want that place to be with Jesus. Because I believe that place is the only one that holds us all together.

Church should remind us of, and return us to, Jesus, so that we can find ourselves within him and live out of that humble, patient, unending, faithful, abundant love.

More with Amy Julia:

3 Ways to Find an Ordinary ChurchNonverbal Individuals in the ChurchThe Blessings of a Small ChurchI’m a Denominational Mutt

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , Twitter ,  Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform. 

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Finding Other Ways to Communicate…

“I call shotgun.”

I remember these days, back when I squabbled with my sisters over who got to sit up front. Now we are reenacting the same conversations within my own household. There’s usually a power struggle, huffs of frustration, and rolled eyes.

But last week, when Penny called shotgun, William said, “Penny, my legs go up to your shoulders. I should get shotgun.”

Penny looked at him, immovable. 

“I’m trying to understand why it’s so important to you to have the front seat,” William tried again.

Penny stayed silent.

I was ready to intervene, either by pronouncing some sort of compromising or strong-arming one of them. Instead, William said, “Pen, I know it’s sometimes easier for you to write things down than to say them out loud. Do you think you could write down why this matters to you?”

And she did. She wrote (see photo): “Two reasons. 1. I like being the dj for the car and 2. It makes me feel more like a senior/grownup if I get to sit in the front. It makes me feel more mature.”

They figured out a way to communicate without me stepping in. They respected each other with advocating for themselves. They assumed the best about each other. 

There are plenty of kids with intellectual disabilities who can’t speak—or write—for themselves. And plenty of people like William—stronger, taller, more able to say what he thinks quickly and decisively—who can assert themselves and get their way. So yes, this moment stood out to me as a milestone in family communication, but it also reminded me that we all need and deserve to be treated with respect. We all need to be given ways to communicate, even if it means slowing down and becoming curious about things we think we already understand. 

In the end, William rode in the front seat. Penny dj’d from the back. We forgot to invite her into a conversation along the way and apologized for that later. We are all learning, and bumbling our way forward together. 

Shared with their permission

More with Amy Julia:

Penny In Her Own WordsAbleism at the County FairPenny Got a Job

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , Twitter ,  Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform. 

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Introducing Season 7 of Love Is Stronger Than Fear Podcast

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Love is stronger than fear. 

What if we really believed it? What if we lived into love and weren’t overcome by anxiety? What if, even in the midst of the harrowing realities of our global catastrophes and the mundane realities of our everyday lives—what if we could live in a way that deepens who we are, that connects us to ourselves, to God, to one another? 

I’m Amy Julia Becker, and this is a podcast about what it means to be human beings who seek love rather than fear, hope rather than cynicism, healing rather than division.

In this season, I am excited to talk with Esau McCaulley about wrestling with his humanity as a Black man in America, and with Curtis Chang about the possibilities that open up when we face our own anxiety. Other guests include New York Times columnist Tish Harrison Warren and bestselling author Curt Thompson. We’ll talk about disability and culture and spirituality and maybe some politics and, again, about walking with courage along a way of grace and love. 

The first episode will drop on September 5th. Meanwhile, now is the time to let other people know about this podcast by sharing this trailer with them, leaving a rating or review, and, if you haven’t already, subscribing so you can get new content every two weeks. 

Together, we can begin to live lives that tap into a deeper truth than all the messages that come at us from advertisers and entertainers all day long. Together, we can live into the truth that love is stronger than fear. I hope you’ll join me for some beautiful, challenging, deepening conversations about all these things starting on September 5th . 

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Learn more with Amy Julia:

To Be Made Well: An Invitation to Wholeness, Healing, and Hope S5 E11 | Breaking Ground: Renewal in a Pandemic Year with Anne SnyderBooks

If you haven’t already, you can  subscribe to receive regular updates and news. You can also follow me on Facebook, Instagram, Twitter, Pinterest, YouTube, and Goodreads, and you can  subscribe to my Love Is Stronger Than Fear podcast on your favorite podcast platforms.

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